Hey everyone, quick question, I have been on methotrexate for my RA about 5 weeks now and the side effects are terrible for me, stomach pains, nausea, extreme fatigue, so I called the doc and told her and she wants to try injections of methotrexate now, my question is I have read a lot about this medication and I do not like what I have read at all I would much rather not even take it because of the reviews and what it does, do you think the doc would get mad if I told her I prefer to be on something else I have looked at hundreds of reviews and maybe 10 of them were positive the rest said to stay away from it, I wake up every morning with stiffness and cannot extend my leg, swollen hand, sore jaw etc, do you think she would put me on something else, I just don't feel comfortable putting this in my body after reading the horrible experiences I don't know if this medication would help or hurt me more
Thank you
So sorry you are going through this. I was diagnosed last october and immediately went on mtx. I demanded NOT to take the pills from all I had read and my history of stomach upsets. Mtx must surely b the gold standard of ra as it seems everyone begins here. It is also used for many other diseases in different strengths. I was very lucky to have no side effects from the drug when taken by injection. My numbers went down and the dosage increased. Still no side effects. From what I have read here, the side effects do tend to lessen with time as the medication begins to work. I still have the symptoms you describe though not as severe as before. This ra is constantly working on us! I see new rheumy this month. I too am hoping for a med which may relieve some of the pain and give me some mobility back! Though it cannot be a biologic as I'm from U.S. And it is unafforable even with my insurance. Guess what I am saying is maybe you could give injections a try and possibly give it a little more time. RA is a lifetime thing and I know sometimes the meds take a longer time to work. Best of luck!
Tell her. If she gets mad, go ahead and take it for a few weeks then tell her it is making you sick. When I took it, I hated it. The day after you are wasted and live in a fog all the time. I didn't take injections though.
Hi Chris, I started on Leflunomide and had instant relief with very little side effects. I went to another Rheumatologist and she immediately wanted me to switch to Methotrexate. I hated it. It made my pain come back and made me sick 24/7. I demanded to get off of it. I'm on my 3rd Rheumy now and finally like this one. I'm now on Leflunomide and Sulfasazadine or however you spell it. I don't feel any better with the sulfa drug added, but my inflammation markets are down. Don't feel you have to take the MTX. It's your body and everyone reacts to RA drugs differently. You get to choose. Good luck!!
Hi Chris,
It sounds like you are suffering some of the side effects of this drug. Explain all the effects to your dr that u have been suffering from MTX.
Also ask if you could try something different. There are other meds that can help in conjunction with MTX or separately to slow down th damage to the joints from RA.
No fun suffering from the side effects and not helping with RA.5 weeks is long enough for your body to show some improvement. Also ask for meds for nausea and pain meds until your better. MTX is a form of chemo therapy at a lower dose than that of cancer patients has been used for many other health issues for years. Some people react differently to medications.
Set an appt. up and tell the nurse that you may need to change meds due to the illness you feel from MTX.
Hi Chris
just a thought that you are more likely to have problems with mxt posted on forums than that it s ok- just the nature of reviews and forums.
it is the gold standard o treatment because it works for many people. But, as you ve found, the side effects are too awful for some, some get no benefit, and a very few are made I'll from it.
maybe you could try the injections and just see?
but, as someone else posted, there are alternative DMARDS. But if at some point in the future you were to need a biologic to control your ra they are often ( but not always )used in conjunction with mxt.
Hi Chris
I was on methotrexate for one year and I thought I was cured but unfortunately my liver function was too high with it so now on Sulfasalazine but not working. Everyone is different so I would go for the injection and try to persevere with it
hi Chris.i had this dilemma years back.should I shouldn't I.at the time I was always a easy going man and did what was asked.i got to no load of folk with ra.they told me keep away from my.i did.was never offered it.one night rushed into hospital.paramedic and I talked.he amazed me by saying"do yourself a favour,dont do it if offered.and I've stuck to that when 2-3yrs later offered it.i was nervous when said NO!!I shouldn't have been.doc was fine.the docs are aware of risks of mtx.its your life.is it worth risk?take care buddy.ivan.
Hi Chris
I am on highest dose of this drug and inject it. Initially I didn't like it but I have adjusted to it. Its a cancer drug and to help the disease you have to endure side effects. But if you are feeling so bad its obviously not for you. I just got such relief from pain I carried on with it. I am sure there are alternatives and you must ask about them. Sadly I think RA is such a disease that you need to contain it or it will just get progressively worse. Strong drugs are needed but you must find a compromise as to which drug you can cope with. There are a lot of people on MTX who have got relief and stay pain free. Don't be afraid to ask for an alternative drug and good luck!
Sherry
Hi chris i would say its up to you what medication you take not the doctor, they can give you medications to slow progress down and help you but at the end of it all its up to you if you take it or not, i would have chatt with doctor and say how there making you feel and you would like to try something else as you not happy with having to live with these feelings eveyday and see what else they can give you good luck with it all xx
Hi was just reading your post and wondered how you are getting on with the sulfasalazine as these are making me ill headache / dizzy/ spaced out feeling/ sick feeling / hot / palpatations just ill, i have stopped taking them i couldnt even get up to 4 a day max that my doc wanted me to go on, do you have any side effects or are you managing fine with them? ive been on them since last oct and feel like side effects are getting worse not better as longer take them body getting use to them but seems to be opposite with me felt great while started on them all RA signs better, still RA signs better but side effects of meds not and seem to get worse xx
RA is never cured just controlled. If these drugs fail to contain the progression then you are able to go on the biological drugs but you do have to go through a few hoops to get these drugs but from what I hear its worth it. Doctors have to treat us with all the cheaper drugs first such as sulfas and MTX and some people live happily on them. But some, like me, have found that the effects of these drugs has worn off. So now started biological and have high hopes.
hi sherry.read yr reply bout MTX.i always suspected they put you on cheapest drugs 1st.to me makes sense.only so much money go round.forgive my ignorance,but what do you mean by biological?what are they?many thanks Ivan.
Hi Ivan.
You are not ignorant! Its a complicated subject. I started out on this journey without a clue but being obsessed with doing research and googling I have learnt a lot. Biological drugs are a relatively new way of treating RA. They have been used for about 10 years now. But they are mega expensive! So you have to fit the criteria to apply for special funding to get them. This means you have to have tried all the usual drugs like MTX and sulph. If after you have been on these drugs for some time but the disease does not respond to them you should be offered the bios. But you have to be assessed and bloods show the disease is very active. If so then funding will be applied for (to NICE) and you wait for their decision. I was accepted and put on a bio drug (rituximab). I have heard wonderful things and have spoken directly to people on them. They can take up to 3 months to kick in so its early days yet for me. Hope this all enlightens you a little! Can't type any more right now!
Jayne
If your rheumatologist does prescribe a biologic many of the manufacturersurgery have copay assistance programs to assist in the cost. You can usually find this info on their website.
Supposed to be manufacturer, don't know what my tablet thought I was trying to say lol
I have been on MTX for over 10 years now.
It is the only thing that is giving me some relief with very little or no side effects.
I was started from a very low base 5mg once a week, and then every 6 months, and lots of blood tests later upped another 5 mg, so took years to get me onto the dosage I am on now at 35mg injectable.
A new drug came available less than 5 years ago now, Leflunomide, 10mg helped me, so rheumo decided that 20mg of leflunomide would be better, nearly killed me, extreme high blood pressure, apparently i fall into a small group of patients 2% from what I have been told that cannot tolerate the 20mg dose.
Then biologicals came availbale, one of the tests they must do for you is have you been exposed to TB and do you have antibodies in your blood.
Unfortunately I have been exposed and have those antibodies, also having had cancer rules out the biologicals for me.
Hoping in the future they do come up with something that helps, as my family riddled with auto immunine problems, I got the arthiritis. others have other issues.
It works differently in the UK. Its on NHS. If bios are needed and you qualify you get them free.
Lyn I have had cancer and there are bios which are safe to take. I have just started rituximab. Most of the bios are considered safe for cancer patients now. Not sure about the other issues though. I started on MTX couple years back and now inject on high dose. It was great at first but I became immune to it. Hoping bios will help me. Hope you find something that works for you. X
I have had a very different experience of methothraxate. I have been taking it for almost a year and I have not had any side effects. Maybe I am not taking the same dose or I have the constitution of an ox! I take 15 mg once a week. For the last 6 months I have also started taking 400 mgs a day of hydroxychloroquine.